Guest guest Posted February 24, 2005 Report Share Posted February 24, 2005 We are seeing the doctor in Inverness, UK The board in their plaster room has numerous photos of children treated there, I can not believe they all went into relapse. If I express doubt in his expertize I'll have to go to another town looking for a surgeon but this is not really the concern, we travel 70 miles anyway to Inverness. I'm afraid it is not good to start treatment with one professional and then go for another one. It has been 2 weeks since the plasters went off and the feet relapsed already but I was not concerned since they were overcorrected anyway. It is necessary to trust the doctor, otherwise the one can go mad thinking what if... And that is why it is so difficult to change the doctor. I have an appointment with him in a week, I'll raise the issue. Could you recommend me a professional in Scotland please. I know you know how does it fill to cry while your precious 3 day old girl is plastered so you will understand me for sure... oksana molodyka@...> wrote: Sorry I have asked about and then red they are AFO splints. --------------------------------- 250MB gratis, Antivirus y Antispam Correo Yahoo!, el mejor correo web del mundo Abrí tu cuenta aquí Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2005 Report Share Posted February 24, 2005 Many of us here understand your fears and frustrations. I would venture to guess that at least half, if not more, of our group started off with one doctor and ended up switching to another doctor (I think there is a poll regarding this in the website's polls section). It can be intimidating to say the least to start questioning what your child's physician is telling you- but once you educate yourself on the different options for treatment of talipes (clubfoot) you could quite possibly end up knowing *more* about it than your physician. Reading the testimonials of the various families here (from all over the world) will definitely let you know that you are not alone and please take it from our experiences that blindly trusting a doctor can lead you down some long and uncertain paths in clubfoot treatment. Does your current doctor claim to be using the Ponseti method? Just to clarify- using an AFO does not mean that there will be 100% guarantee of relapse. However, there is a higher risk of relapse with an AFO compared to the FAB. There is an even higher risk of relapse if left unbraced- as you saw with your daughter. How old is she now?? As to a top-notch doctor in Scotland- I would highly recommend Dr. Short. Here is her contact information off of Dr. Ponseti's website: Short, M.D. Crosshouse Hospital Kilmarnock Ayrshire KA2 0BE Scotland United Kingdom email: rachel.short@... Here is a link to Dr. Ponseti's qualified physician's list: http://www.vh.org/pediatric/patient/orthopaedics/clubfeet/physicians. html I met Dr. Short in July/August of 2000 when we were in Iowa City having my daughter treated by Dr. Ponseti. She was there training with him in person and actually helped to apply the plasters to my daughter at 2 of the appointments. She was wonderful. In addition to reviewing Dr. Ponseti's site above, please feel free to visit this site: http://pages.ivillage.com/ponseti_links Here's my daughter's website if you're interested: http://ponseticlubfoot.freeservers.com/ Ask any questions- we're here for you! Best wishes- & (3-16-00) left clubfoot, switched to Ponseti method at 4 mo. old > > Sorry I have asked about and then red they are AFO splints. > > > --------------------------------- > 250MB gratis, Antivirus y Antispam > Correo Yahoo!, el mejor correo web del mundo > Abrí tu cuenta aquí > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2005 Report Share Posted February 24, 2005 Oksana, There are many of us on this site who trusted our first doctor in the beginning and then discovered the doctor was not practicing the Ponseti method correctly in one way or another. So we switched to doctors that do. Some cases were much worse than others. I think some babies relapsed completely and needed surgery because they are older and casting wouldn't have worked, there are some cases where they found a new doctor just in the nick of time where the relapse was corrected by casting. There is a broad spectrum of different cases on this site where we all shoulda, coulda, woulda, etc. In addition, there are many members of this board who have great doctors from the beginning. Now does it necessarily mean that just because your doctor prescribes the AFO's that all of his clubfoot patients will relapse. No. I'm sure there are some mild clubfoot cases that may be successful in AFO's, but surely not that many. I'm also not saying your current doctor is necessarily a bad doctor either. In fact, he may just not know better and it is up to us to help educate doctors like him. However, I am concerned that you mentioned your baby's feet are relapsing already and have only been out of the casts for 2 weeks. It will only continue to get worse, slowly but surely. I would try to get a second opinion. I'm sorry I don't know any Ponseti qualified doctors in land, but I'm sure someone from this board knows one close to that area. I completely understand how hard it is on the little ones, but I also believe it is much harder on the parents. Ultimately, we want to do what is best for our children and sometimes that requires switching doctors and starting over. Good luck. Let us know what you decide. Shook Retail Operations Manager/Baking Instructor Vie de France Yamazaki, Inc. 2070 Chain Bridge Rd. Suite 500 Vienna, VA 22182 x374 x374 fax Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2005 Report Share Posted February 24, 2005 One more link that might help you- it's a free downloadable booklet available in a variety of languages with technical details about the method (warning- there are graphic medical pictures in the book). http://www.global-help.org/publications/ponseti-cf.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2005 Report Share Posted February 24, 2005 We already changed doctor but it was in the same hospital so I do not know whether it counts for change.As far as I remember it was called " modified Poncetti " . She was in splints these two weeks, sorry for making wrong impression she was left with nothing. I'm worried as well if I'll go for another doctor he might say he can not fit the bar not immediately after plaster. She is 3 month and 3 weeks now. jennyandkelly jenrichtrevillian@...> wrote: Many of us here understand your fears and frustrations. I would venture to guess that at least half, if not more, of our group started off with one doctor and ended up switching to another doctor (I think there is a poll regarding this in the website's polls section). It can be intimidating to say the least to start questioning what your child's physician is telling you- but once you educate yourself on the different options for treatment of talipes (clubfoot) you could quite possibly end up knowing *more* about it than your physician. Reading the testimonials of the various families here (from all over the world) will definitely let you know that you are not alone and please take it from our experiences that blindly trusting a doctor can lead you down some long and uncertain paths in clubfoot treatment. Does your current doctor claim to be using the Ponseti method? Just to clarify- using an AFO does not mean that there will be 100% guarantee of relapse. However, there is a higher risk of relapse with an AFO compared to the FAB. There is an even higher risk of relapse if left unbraced- as you saw with your daughter. How old is she now?? As to a top-notch doctor in Scotland- I would highly recommend Dr. Short. Here is her contact information off of Dr. Ponseti's website: Short, M.D. Crosshouse Hospital Kilmarnock Ayrshire KA2 0BE Scotland United Kingdom email: rachel.short@... Here is a link to Dr. Ponseti's qualified physician's list: http://www.vh.org/pediatric/patient/orthopaedics/clubfeet/physicians. html I met Dr. Short in July/August of 2000 when we were in Iowa City having my daughter treated by Dr. Ponseti. She was there training with him in person and actually helped to apply the plasters to my daughter at 2 of the appointments. She was wonderful. In addition to reviewing Dr. Ponseti's site above, please feel free to visit this site: http://pages.ivillage.com/ponseti_links Here's my daughter's website if you're interested: http://ponseticlubfoot.freeservers.com/ Ask any questions- we're here for you! Best wishes- & (3-16-00) left clubfoot, switched to Ponseti method at 4 mo. old > > Sorry I have asked about and then red they are AFO splints. > > > --------------------------------- > 250MB gratis, Antivirus y Antispam > Correo Yahoo!, el mejor correo web del mundo > Abrí tu cuenta aquí > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2005 Report Share Posted February 24, 2005 Decided- I'll try to see the doctor in Kilmarnok. Thank you people ! I'll keep you up to date. stupidsusan.shook@... wrote: Oksana, There are many of us on this site who trusted our first doctor in the beginning and then discovered the doctor was not practicing the Ponseti method correctly in one way or another. So we switched to doctors that do. Some cases were much worse than others. I think some babies relapsed completely and needed surgery because they are older and casting wouldn't have worked, there are some cases where they found a new doctor just in the nick of time where the relapse was corrected by casting. There is a broad spectrum of different cases on this site where we all shoulda, coulda, woulda, etc. In addition, there are many members of this board who have great doctors from the beginning. Now does it necessarily mean that just because your doctor prescribes the AFO's that all of his clubfoot patients will relapse. No. I'm sure there are some mild clubfoot cases that may be successful in AFO's, but surely not that many. I'm also not saying your current doctor is necessarily a bad doctor either. In fact, he may just not know better and it is up to us to help educate doctors like him. However, I am concerned that you mentioned your baby's feet are relapsing already and have only been out of the casts for 2 weeks. It will only continue to get worse, slowly but surely. I would try to get a second opinion. I'm sorry I don't know any Ponseti qualified doctors in land, but I'm sure someone from this board knows one close to that area. I completely understand how hard it is on the little ones, but I also believe it is much harder on the parents. Ultimately, we want to do what is best for our children and sometimes that requires switching doctors and starting over. Good luck. Let us know what you decide. Shook Retail Operations Manager/Baking Instructor Vie de France Yamazaki, Inc. 2070 Chain Bridge Rd. Suite 500 Vienna, VA 22182 x374 x374 fax Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2005 Report Share Posted February 24, 2005 Hi, We are in London and have Henry now 3 who had both feet clubbed. At the time there was no one near us who was a Ponseti certified doc and we ended up in New Zealand as that is where my husband is from. Now the good news is there are some doctors up north near you. You can find them at the virtual hospital site in Iowa where Ponseti works: www.vh.org/pediatric/patient/orthopaedics/clubfeet/physicians.html Then click on Europe and scroll down to see all the doctors in Europe. There is one in Sunderland, one in Dumfries and Dundee and several others now in the UK. Is the doctor you are with at the moment a certified Ponseti one? It does not sound like it. You are not too late to change doctors at all - the sooner the better - and do not feel a moments guilt in doing so as the proper Ponseti technique works like a charm as far as we are concerned. Even though one of Henry's feet has had a relapse, the other is fine and he has had very little intervention compared to what would have happened to him if we had gone to a London hospital. The Chelsea and Westminster are now doing the technique due to what they saw and heard at a conference in Manchester where ironically our Henry was " exhibit A " . The doctors who are looking after him now saw and felt his amazing feet back then and decided to learn it for themselves!! Now matter how far you have to travel it is so worth it to get the right doctor - I mean we went to New Zealand!! Let us know how you get on and good luck!! and Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2005 Report Share Posted February 24, 2005 AT 3 months of age, I feel very confident your baby could be re-casted (if necessary) and put in to the DBB with very good results. s. Re: Re: spint tipe We already changed doctor but it was in the same hospital so I do not know whether it counts for change.As far as I remember it was called " modified Poncetti " . She was in splints these two weeks, sorry for making wrong impression she was left with nothing. I'm worried as well if I'll go for another doctor he might say he can not fit the bar not immediately after plaster. She is 3 month and 3 weeks now. jennyandkelly jenrichtrevillian@...> wrote: Many of us here understand your fears and frustrations. I would venture to guess that at least half, if not more, of our group started off with one doctor and ended up switching to another doctor (I think there is a poll regarding this in the website's polls section). It can be intimidating to say the least to start questioning what your child's physician is telling you- but once you educate yourself on the different options for treatment of talipes (clubfoot) you could quite possibly end up knowing *more* about it than your physician. Reading the testimonials of the various families here (from all over the world) will definitely let you know that you are not alone and please take it from our experiences that blindly trusting a doctor can lead you down some long and uncertain paths in clubfoot treatment. Does your current doctor claim to be using the Ponseti method? Just to clarify- using an AFO does not mean that there will be 100% guarantee of relapse. However, there is a higher risk of relapse with an AFO compared to the FAB. There is an even higher risk of relapse if left unbraced- as you saw with your daughter. How old is she now?? As to a top-notch doctor in Scotland- I would highly recommend Dr. Short. Here is her contact information off of Dr. Ponseti's website: Short, M.D. Crosshouse Hospital Kilmarnock Ayrshire KA2 0BE Scotland United Kingdom email: rachel.short@... Here is a link to Dr. Ponseti's qualified physician's list: http://www.vh.org/pediatric/patient/orthopaedics/clubfeet/physicians. html I met Dr. Short in July/August of 2000 when we were in Iowa City having my daughter treated by Dr. Ponseti. She was there training with him in person and actually helped to apply the plasters to my daughter at 2 of the appointments. She was wonderful. In addition to reviewing Dr. Ponseti's site above, please feel free to visit this site: http://pages.ivillage.com/ponseti_links Here's my daughter's website if you're interested: http://ponseticlubfoot.freeservers.com/ Ask any questions- we're here for you! Best wishes- & (3-16-00) left clubfoot, switched to Ponseti method at 4 mo. old > > Sorry I have asked about and then red they are AFO splints. > > > --------------------------------- > 250MB gratis, Antivirus y Antispam > Correo Yahoo!, el mejor correo web del mundo > Abrí tu cuenta aquí > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2005 Report Share Posted February 24, 2005 Ooo I contacted consultant from Great Portland Hospital, as far as I understand it is the most famous private hospital here in UK. I've got the letter saying it will be clear whether the treatment she's got gave a result at 6-7th month when it could be decided whether she needs an operation and that now is a stage of physiotherapy. So it would be worthwhile to see him in a couple of months. The modified Ponceti method was claimed to be used. From what you people say the one makes a conclusion that the Ponceti method without any modifications is the best at the moment. I understand I might be asking for too much: I'd appreciate links to studies proving this. Thanks again & kcy62@...> wrote: Hi, We are in London and have Henry now 3 who had both feet clubbed. At the time there was no one near us who was a Ponseti certified doc and we ended up in New Zealand as that is where my husband is from. Now the good news is there are some doctors up north near you. You can find them at the virtual hospital site in Iowa where Ponseti works: www.vh.org/pediatric/patient/orthopaedics/clubfeet/physicians.html Then click on Europe and scroll down to see all the doctors in Europe. There is one in Sunderland, one in Dumfries and Dundee and several others now in the UK. Is the doctor you are with at the moment a certified Ponseti one? It does not sound like it. You are not too late to change doctors at all - the sooner the better - and do not feel a moments guilt in doing so as the proper Ponseti technique works like a charm as far as we are concerned. Even though one of Henry's feet has had a relapse, the other is fine and he has had very little intervention compared to what would have happened to him if we had gone to a London hospital. The Chelsea and Westminster are now doing the technique due to what they saw and heard at a conference in Manchester where ironically our Henry was " exhibit A " . The doctors who are looking after him now saw and felt his amazing feet back then and decided to learn it for themselves!! Now matter how far you have to travel it is so worth it to get the right doctor - I mean we went to New Zealand!! Let us know how you get on and good luck!! and Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2005 Report Share Posted February 24, 2005 At 02:44 PM 2/24/2005, you wrote: >Ooo I contacted consultant from Great Portland Hospital, as far as I >understand it is the most famous private hospital here in UK. I've got the >letter saying it will be clear whether the treatment she's got gave a >result at 6-7th month when it could be decided whether she needs an >operation and that now is a stage of physiotherapy. So it would be >worthwhile to see him in a couple of months. The modified Ponceti method >was claimed to be used. You should contact Naomi who I think is in Manchester. These people aren't going to be able to help you, your child's foot has already relapsed and they apparently could care less. This method does not have a 6-7mo mark where you decide if surgery is needed. With her foot already relapsing she's absolutely going to be told that surgery is needed. Get thee to a competent Ponseti physician and don't look back! Modified Ponseti... why do they even try? Argh!!! They're doing it ALL WRONG and your chances of success are very slim. Especially since her feet have already relapsed. If they're straight forward now, imagine what two more weeks is going to do to them. Clubfeet relapse. It's just inherent to the deformity and this is why bracing is so important. Have you looked at the PonSeti Website? http://www.vh.org/pediatric/patient/orthopaedics/clubfeet/index.html Contact these docs. I only know of Naomi having been recommended here by other parents. But perhaps this other doc is closer to you and not modifying the method. Don't be fooled by the listed physicians on the Ponseti list... our doc is listed and he's modifying right now too, so much that I can't in good conscious recommend him to anyone here locally. So just because they're listed here doesn't mean they won't modify. You have to know what is right and what isn't and ask lots of questions. Dr. Rupert D. Ferdinand FRCS (Tr & Orth) Consultant Foot and Ankle Surgeon Dept. of Orthopaedics Dumfries & Galloway Royal Infirmary Bankend Road Dumfries, Scotland DG1 4AP Tel: 01387 241045 Fax: 01387 241816 R.Ferdinand@...>Email Dr. Ferdinand Dr. Naomi Booth Hall Children's Hospital Manchester, U.K. Fax or phone UK 0 naomi.davis@...>Email Dr. > > From what you people say the one makes a conclusion that the Ponceti > method without any modifications is the best at the moment. >I understand I might be asking for too much: I'd appreciate links to >studies proving this. I don't know of anything right off hand, but someone should be able to give you something which will help. However... the sheer number of parents who have had docs who have modified the method (in any way) and then been told surgery was the only answer only to then find another doc who managed to correct their ( " only surgery can fix these feet " ) child's feet in 2 or 3 casts and the child is STILL corrected... should be testament enough that you need to find a competent physician. SOOOOO many parents have come here and say their only option was surgery to then find it was not necessary at all... That you can't argue with. The Ponseti Method enjoys a 95% success rate if not modified. Many arrogant physicians seem to think they know better, or for whatever weird reason they decide they don't need to do it the way it's supposed to be done... and these physicians then do NOT enjoy the 95% success rate... they then go on to say that it can't be accomplished. Well duh! Do it right and you might not have such a low success rate! I gotta get off here lol. Todays posts are just making me freaked out about all this arrogance and modification and idiot docs who don't give a darn about our sweet little ones. Go do whatever you have to to get your daughter's feet fixed so she never knows there is a problem with them at all. This is possible... really! Kori >Thanks again > & kcy62@...> wrote: >Hi, > >We are in London and have Henry now 3 who had both feet clubbed. At the >time there was no one near us who was a Ponseti certified doc and we >ended up in New Zealand as that is where my husband is from. Now the >good news is there are some doctors up north near you. You can find >them at the virtual hospital site in Iowa where Ponseti works: >www.vh.org/pediatric/patient/orthopaedics/clubfeet/physicians.html > >Then click on Europe and scroll down to see all the doctors in Europe. >There is one in Sunderland, one in Dumfries and Dundee and several >others now in the UK. Is the doctor you are with at the moment a >certified Ponseti one? It does not sound like it. You are not too late >to change doctors at all - the sooner the better - and do not feel a >moments guilt in doing so as the proper Ponseti technique works like a >charm as far as we are concerned. Even though one of Henry's feet has >had a relapse, the other is fine and he has had very little >intervention compared to what would have happened to him if we had gone >to a London hospital. > >The Chelsea and Westminster are now doing the technique due to what >they saw and heard at a conference in Manchester where ironically our >Henry was " exhibit A " . The doctors who are looking after him now saw >and felt his amazing feet back then and decided to learn it for >themselves!! > >Now matter how far you have to travel it is so worth it to get the >right doctor - I mean we went to New Zealand!! > >Let us know how you get on and good luck!! > > and > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2005 Report Share Posted February 25, 2005 You wrote: I understand I might be asking for too much: I'd appreciate links to studies proving this. This is not asking too much! There are lots of medical studies proving that the method is sound and not " too good to be true! " . Dr. Ponseti has 25 years (and more) of follow up research showing that the method (unaltered) works well and provides fully-functional and pain free feet well into adulthood. If you to to http://pages.ivillage.com/ponseti_links and look in the medical journals tab, you will find links to some of the most recent medical papers that are referenced on the Internet. If you go into the files section here on this group's website, has some reference papers that provide a vast amount of information based on his personal research as well. Also in the files section is a reprint of the intro to Dr. Ponseti's 1996 book (given with his permission), that I highly recommend that you read in addition to the information at his website. I would still recommend that you phone or email Dr. Short to get her opinion. She has been using the method for over 5 years successfully from what I know and I'm sure she'd be happy to consult with you regarding your daughter. If you contact Naomi in England, I'm sure she would be happy to recommend you to a doctor in Scotland also (might be Dr. Short or someone closer to you even). I, too, am appalled that your current doctor would tell you that you need to wait until your daughter is 6-7 months old to see how successful treatment has been and if she'll need surgery. There shouldn't be a " wait and see " approach if the doctor knows what their doing. Doctors who are experienced with the Ponseti method exude a confidence that just a few casts and possibly a percutaneous tenotomy are all that are needed to achieve *full* correction. And this takes only a matter of weeks. Keep researching and asking questions- we're here to answer your questions and help you find the information you're looking for so that you can be extremely confident in the decisions you make on your daughter's behalf! Have a good weekend! & (3-16-00), left clubfoot Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2005 Report Share Posted February 25, 2005 Hi again, Just because it is a world famous hospital does not mean it is necessarily the best I am afraid. We originally went to Great Ormond Street - another world renowned hospital and I am afraid the top consultant at the time was not much help at all - he again was doing his own version of Ponseti and doing major surgery on children mainly. If you look up the address I gave you and go to other links about clubfoot you will get all the information you need. The ironic thing about the man we saw in London is that he is now in Bristol practising the proper Ponseti technique. It is of course up to you and you must do what you think is best for your little person - but I cannot stress enough just how well the proper Ponseti works. Providing the feet are " normal " clubbed feet, your child will not have to go through the invasive surgery that other surgeons offer. There will not be major scar tissue which causes problems for them in later life - this is one of the things which hit me about my child, that whatever we did at this early stage in their life had consequences for the rest of their life, like when I am an old woman and they are still young and leading active lives. Leaving treatment until 6 or 7 months of age is very late and this is the around the age when other surgeons do major surgery. The only surgery our son had done was under a local - no need to knock them out and he came out ASLEEP!! We could not believe it - and he had minimal pain. Please do research the site and read everything and look at the photos , read other parents testimonies. We are not fibbing as we have nothing to gain except to help other parents and child deal with this complaint in the best way possible for them and their child. You can also email Mr Ponseti direct and send photos for his opinion and he will reply to you. Look up the Steps web site too :www.steps-charity.org.uk - they are a charity dedicated to lower limb problems and you can phone them for advice. They are very nice and the woman who set it up has a 21 yr old son now who had clubbed feet - when he was small there was no Ponseti here and he now as some problems with scar tissue and stiffness caused by invasive surgery. She is a great promoter of Ponseti in the UK and in Africa. I really hope you go with the Ponseti technique and wish you lots of luck! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2005 Report Share Posted February 25, 2005 Hi, Me in the UK again, just read this after sending my latest one in and cannot agree more with this!!!!! PLEASE PLEASE we can't all be wrong here can we???????? On Thursday, February 24, 2005, at 11:59 pm, frogabog wrote: > > RED FLAG!!! The Ponseti Method should never be modified. Run, far > away > from any doc who does this and find one who follows it precisely. They > modify it and the results are less than optimal. When you said her > feet > relapsed in 2w, well that's a big sign she absolutely needs a doc who > knows > what the heck s/he's doing. Change docs as many times as you need to, > who > cares what they think anyway? It's YOUR child and HER life and HER > feet. Not theirs. THEY don't have to live the rest of their life with > messed up feet, THEY don't have to live with a child who has painful > and > stiff feet that don't work well as their child grows up. THEY don't > have to > listen to a child cry because they can't run and jump like the other > kids. THEY don't have to take care of a child who has had her foot > splayed > open, bones and tendons moved, etc. THEY don't have to care for a > child > who has to use a wheelchair for school after surgery. THEY don't have > to > accept the risk of infection from surgery for their child (yes, this > happens all the time. My dad has spent the last two years fighting a > deadly staph infection from just one surgery - all surgery has serious > risks). Lots of things that DO NOT affect a doc. It is your right as > a > patient to get the kind of care you desire and deserve. Both for > yourself > and for your child. Don't let any doc make you feel bad about > switching or > seeking second opinions... for anything. A doc who gives you grief > about > this is exactly the kind of doc you do not want to trust the care of > your > child or yourself in. > > > To respond to the rest of this post, there is no reason why the child > can't > get the brace immediately after casting is completed. If so, it's > another > modification. The shoes should be fitted before the last casting is > done, > and the brace ordered and available when you go to get the cast > removed. If it's not there, the cast should be left on or replaced to > maintain the correction till it comes in. If this can't happen... > you run > to the next doc on your list. There is simply no excuse for not > having the > brace available immediately. You've seen how fast these feet can > relapse, > imagine if no splint (I assume an AFO -plastic molded things right?) > was on > the feet. This is why it's imperative that the child wear the FAB/DBB > 23/7 > for 3 months, and after that reduce hours *slowly* over the next year > till > they're walking and can go to nights and naps only (12-14hr/d). The > foot > must remain overcorrected, a foot that points straight forward is not > corrected enough to stay corrected. It should absolutely be turned > very > far to the outside (abduction - 70 degrees) or it will relapse. Don't > worry about this, it will point normally eventually. > > OK - got myself a little worked up here lol... > > And I just read your latest post... this one didn't get sent yet > because I > was thinking I was too worked up. Girl... RUN from those hospitals. > They > will not help your child's feet! > > Kori > Darbi - 3/28/03 > Rt. CF - FAB 12-14hr/d > > > At 11:20 AM 2/24/2005, you wrote: > >> We already changed doctor but it was in the same hospital so I do not >> know >> whether it counts for change.As far as I remember it was called >> " modified >> Poncetti " . She was in splints these two weeks, sorry for making wrong >> impression she was left with nothing. I'm worried as well if I'll go >> for >> another doctor he might say he can not fit the bar not immediately >> after >> plaster. >> She is 3 month and 3 weeks now. >> >> >> >> >> jennyandkelly jenrichtrevillian@...> wrote: >> >> Many of us here understand your fears and frustrations. >> I would venture to guess that at least half, if not more, of our >> group started off with one doctor and ended up switching to another >> doctor (I think there is a poll regarding this in the website's >> polls section). It can be intimidating to say the least to start >> questioning what your child's physician is telling you- but once you >> educate yourself on the different options for treatment of talipes >> (clubfoot) you could quite possibly end up knowing *more* about it >> than your physician. Reading the testimonials of the various >> families here (from all over the world) will definitely let you know >> that you are not alone and please take it from our experiences that >> blindly trusting a doctor can lead you down some long and uncertain >> paths in clubfoot treatment. Does your current doctor claim to be >> using the Ponseti method? Just to clarify- using an AFO does not >> mean that there will be 100% guarantee of relapse. However, there >> is a higher risk of relapse with an AFO compared to the FAB. There >> is an even higher risk of relapse if left unbraced- as you saw with >> your daughter. How old is she now?? >> As to a top-notch doctor in Scotland- I would highly recommend Dr. >> Short. Here is her contact information off of Dr. Ponseti's >> website: >> Short, M.D. >> Crosshouse Hospital >> Kilmarnock >> Ayrshire KA2 0BE Scotland >> United Kingdom >> email: rachel.short@... >> >> Here is a link to Dr. Ponseti's qualified physician's list: >> http://www.vh.org/pediatric/patient/orthopaedics/clubfeet/physicians. >> html >> >> I met Dr. Short in July/August of 2000 when we were in Iowa City >> having my daughter treated by Dr. Ponseti. She was there training >> with him in person and actually helped to apply the plasters to my >> daughter at 2 of the appointments. She was wonderful. >> >> In addition to reviewing Dr. Ponseti's site above, please feel free >> to visit this site: http://pages.ivillage.com/ponseti_links >> Here's my daughter's website if you're interested: >> http://ponseticlubfoot.freeservers.com/ >> Ask any questions- we're here for you! >> Best wishes- >> & (3-16-00) >> left clubfoot, switched to Ponseti method at 4 mo. old >> >> >> >>> >>> Sorry I have asked about and then red they are AFO splints. >>> >>> >>> --------------------------------- >>> 250MB gratis, Antivirus y Antispam >>> Correo Yahoo!, el mejor correo web del mundo >>> Abrí tu cuenta aquí >>> >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2005 Report Share Posted February 25, 2005 Sorry again for giving you the wrong impression our current doctor said to wait. Our doctor told me exactly what you've said the Ponceti experienced doctor would tell. The words about operation came from a doctor I've contacted for a second opinion. jennyandkelly jenrichtrevillian@...> wrote: You wrote: I understand I might be asking for too much: I'd appreciate links to studies proving this. This is not asking too much! There are lots of medical studies proving that the method is sound and not " too good to be true! " . Dr. Ponseti has 25 years (and more) of follow up research showing that the method (unaltered) works well and provides fully-functional and pain free feet well into adulthood. If you to to http://pages.ivillage.com/ponseti_links and look in the medical journals tab, you will find links to some of the most recent medical papers that are referenced on the Internet. If you go into the files section here on this group's website, has some reference papers that provide a vast amount of information based on his personal research as well. Also in the files section is a reprint of the intro to Dr. Ponseti's 1996 book (given with his permission), that I highly recommend that you read in addition to the information at his website. I would still recommend that you phone or email Dr. Short to get her opinion. She has been using the method for over 5 years successfully from what I know and I'm sure she'd be happy to consult with you regarding your daughter. If you contact Naomi in England, I'm sure she would be happy to recommend you to a doctor in Scotland also (might be Dr. Short or someone closer to you even). I, too, am appalled that your current doctor would tell you that you need to wait until your daughter is 6-7 months old to see how successful treatment has been and if she'll need surgery. There shouldn't be a " wait and see " approach if the doctor knows what their doing. Doctors who are experienced with the Ponseti method exude a confidence that just a few casts and possibly a percutaneous tenotomy are all that are needed to achieve *full* correction. And this takes only a matter of weeks. Keep researching and asking questions- we're here to answer your questions and help you find the information you're looking for so that you can be extremely confident in the decisions you make on your daughter's behalf! Have a good weekend! & (3-16-00), left clubfoot Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2005 Report Share Posted February 25, 2005 But your daughter is wearing AFO's and her foot has already relapsed. What does your doc say about that? Kori (hope you don't think we're TOO passionate about this here. We just want all babies to have the best feet they possibly can :~} ) At 10:46 AM 2/25/2005, you wrote: >Sorry again for giving you the wrong impression our current doctor said to >wait. Our doctor told me exactly what you've said the Ponceti experienced >doctor would tell. >The words about operation came from a doctor I've contacted for a second >opinion. > >jennyandkelly jenrichtrevillian@...> wrote: > >You wrote: I understand I might be asking for too much: I'd >appreciate links to studies proving this. > >This is not asking too much! There are lots of medical studies >proving that the method is sound and not " too good to be true! " . >Dr. Ponseti has 25 years (and more) of follow up research showing >that the method (unaltered) works well and provides fully-functional >and pain free feet well into adulthood. >If you to to http://pages.ivillage.com/ponseti_links and look in the >medical journals tab, you will find links to some of the most recent >medical papers that are referenced on the Internet. >If you go into the files section here on this group's website, > has some reference papers that provide a vast amount of >information based on his personal research as well. >Also in the files section is a reprint of the intro to Dr. Ponseti's >1996 book (given with his permission), that I highly recommend that >you read in addition to the information at his website. >I would still recommend that you phone or email Dr. Short to get her >opinion. She has been using the method for over 5 years >successfully from what I know and I'm sure she'd be happy to consult >with you regarding your daughter. If you contact Naomi in >England, I'm sure she would be happy to recommend you to a doctor in >Scotland also (might be Dr. Short or someone closer to you even). >I, too, am appalled that your current doctor would tell you that you >need to wait until your daughter is 6-7 months old to see how >successful treatment has been and if she'll need surgery. There >shouldn't be a " wait and see " approach if the doctor knows what >their doing. Doctors who are experienced with the Ponseti method >exude a confidence that just a few casts and possibly a percutaneous >tenotomy are all that are needed to achieve *full* correction. And >this takes only a matter of weeks. >Keep researching and asking questions- we're here to answer your >questions and help you find the information you're looking for so >that you can be extremely confident in the decisions you make on >your daughter's behalf! >Have a good weekend! > & (3-16-00), left clubfoot > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2005 Report Share Posted February 25, 2005 It was fitted 17days ago. I haven't seen him yet since. frogabog frogabog@...> wrote:But your daughter is wearing AFO's and her foot has already relapsed. What does your doc say about that? Kori (hope you don't think we're TOO passionate about this here. We just want all babies to have the best feet they possibly can :~} ) At 10:46 AM 2/25/2005, you wrote: >Sorry again for giving you the wrong impression our current doctor said to >wait. Our doctor told me exactly what you've said the Ponceti experienced >doctor would tell. >The words about operation came from a doctor I've contacted for a second >opinion. > >jennyandkelly jenrichtrevillian@...> wrote: > >You wrote: I understand I might be asking for too much: I'd >appreciate links to studies proving this. > >This is not asking too much! There are lots of medical studies >proving that the method is sound and not " too good to be true! " . >Dr. Ponseti has 25 years (and more) of follow up research showing >that the method (unaltered) works well and provides fully-functional >and pain free feet well into adulthood. >If you to to http://pages.ivillage.com/ponseti_links and look in the >medical journals tab, you will find links to some of the most recent >medical papers that are referenced on the Internet. >If you go into the files section here on this group's website, > has some reference papers that provide a vast amount of >information based on his personal research as well. >Also in the files section is a reprint of the intro to Dr. Ponseti's >1996 book (given with his permission), that I highly recommend that >you read in addition to the information at his website. >I would still recommend that you phone or email Dr. Short to get her >opinion. She has been using the method for over 5 years >successfully from what I know and I'm sure she'd be happy to consult >with you regarding your daughter. If you contact Naomi in >England, I'm sure she would be happy to recommend you to a doctor in >Scotland also (might be Dr. Short or someone closer to you even). >I, too, am appalled that your current doctor would tell you that you >need to wait until your daughter is 6-7 months old to see how >successful treatment has been and if she'll need surgery. There >shouldn't be a " wait and see " approach if the doctor knows what >their doing. Doctors who are experienced with the Ponseti method >exude a confidence that just a few casts and possibly a percutaneous >tenotomy are all that are needed to achieve *full* correction. And >this takes only a matter of weeks. >Keep researching and asking questions- we're here to answer your >questions and help you find the information you're looking for so >that you can be extremely confident in the decisions you make on >your daughter's behalf! >Have a good weekend! > & (3-16-00), left clubfoot > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2005 Report Share Posted February 26, 2005 Oh Kori, call a duck a duck when you see one - of course we're TOO PATIONATE! hahahaa Could we be possibly be any less? s. (hope you don't think we're TOO passionate about this here. We just want all babies to have the best feet they possibly can :~} ) Quote Link to comment Share on other sites More sharing options...
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